By members of the Breakthrough T1D T1D Caregiver Employee Resource Group
Being a type 1 diabetes (T1D) caregiver is a responsibility none of us expected or wanted, yet we take it on every day with determination and love. Here are a few things we’d like people to know about life as a T1D caregiver.
We’re really good at math and multi-tasking
Before our child’s diagnosis, most of us barely glanced at nutrition labels. Now, in a matter of seconds, we can calculate how much insulin our child needs based on grams of carbohydrates and adjust for fat, protein, insulin on board, activity level, and countless other factors.
We schedule the doctor appointments, the blood work, the prescription refills, the school meetings, and more. “It’s amazing just how many decisions in a day are diabetes-related decisions,” said Krystal, mom to 7-year-old Cole.
As caregivers, we also need to keep our child’s schedule top of mind so we know when they may be more likely to have a high or low blood sugar. Recess and PE at school can cause lows, and tests and snacks can cause highs. But sometimes PE can cause a high, and a snack can cause a low, too. The unpredictability of T1D requires patience, flexibility, and sometimes letting go of control, which can be difficult for caregivers.
“I understand I cannot do it all,” said Elizabeth, mom to 7-year-old Harrison. “But it’s hard for me to trust people will know how to take care of my child.”
We’re tired, but we get through it
Caring for someone with T1D is a 24-7 job. From the moment we wake up, we’re on duty, playing the roles of doctor, nutritionist, mathematician, and more.
“Our minds are constantly thinking ahead,” said Wendy, mom to 13-year-old Emily. “It’s like having two jobs, and you can’t fail at either, so you are always on. It’s a lot.”
“While all parents worry about their kids, when you have a child with a chronic condition like T1D, it’s amplified,” Elizabeth said. “It’s always on your mind, and it can be exhausting.”
As tiring as the days are for a T1D caregiver, the nights can be utterly draining. Thanks to continuous glucose monitors (CGMs), mostly gone are the days of 3 a.m. finger checks. But high and low blood glucose alarms from CGMs can cause sleep disruption. And the caregiver’s racing mind often makes sleeping soundly difficult. But we get through it…with a few yawns and naps along the way.
View Breakthrough T1D’s tips for better sleep.
Together, members of Breakthrough T1D’s T1D Caregivers Employee Resource Group have lost over 10,000 hours of sleep since their children’s diagnoses.
We need to take care of ourselves, too
Being constantly on-call as a T1D caregiver can take a toll on mental, emotional, and physical health. It’s important to recognize when you need to focus on yourself.
“I try to take time for myself,” Elizabeth said. “I’ll spend time alone to read, watch TV, or see friends. It gives me a chance to recharge.”
Talking to a professional can also support caregivers through the more difficult times.
“Shortly after my son’s diagnosis, I started seeing a therapist and that helped me a lot,” Krystal said.
“As moms, we look to ourselves last,” Wendy said. “In the past, I have sought care from my doctor for help with my mental health. Now I try to schedule time for myself to just decompress.”
View Breakthrough T1D’s resources on mental health.
Everything we do is out of love
T1D caregivers may come across as overprotective, but it’s because we want the best for our children. “I’m happy to manage his care while he is a kid since someday, he will have to manage it every day all on his own,” Krystal said.
“I wish more than anything I could take this away from them,” Wendy said. “No matter what I will always care for them to help ease their burden.”
We want everyone to recognize the signs of type 1 diabetes
As passionate as we are about our children, we’re also passionate about raising awareness, especially for the warning signs of type 1 diabetes:
- Frequent urination (polyuria)
- Extreme thirst (polydipsia)
- Fatigue
- Unexplained weight loss
Every day, T1D caregivers make a difference in the lives of their children and the entire T1D community. Thank the T1D caregiver in your life today!
